Wednesday, March 21, 2012

Silly nilly

So thankful for Elena's good health this summer. She is doing great on pulmozyme. She eats well and is looking a little thin, but makes up for it in height as she is having a growth spurt (growing pain in her legs most nights). Her energy is thru the roof! She is constantly playing piano, making up dance routines, creating crafty crafts for herself and her siblings, doing science experiments, swimming, running, biking, playing outside as much as she can between the heat and the rain, and just being a fun and spirited 8 year old.

She is growing up at lightening speed before my very eyes! She is NOT listening to her daddy at all when he says, "Hey, cut that out and stop growing! You just can't be as tall as your mommy just yet!"

We start homeschool back up in a couple weeks. This year Elena is excited to share the school room with her brother, Ethan, who is starting preschool!

Even though life with cystic fibrosis can make us a little coo-coo for cocoa puffs, we are still filled with lots of joy... And a lot of silliness too.

Monday, March 19, 2012

CF Girl!

While in Disney World last month collecting character signatures, Elena decided that she should perfect her own.  This is what she came up with:

That's about right after this weekend!

 Visit our blog for details and videos of our famous little girl!

Tuesday, March 13, 2012

Rockstar Awesomeness continues

Dr. McKean is really a truly fabulous and amazing Man and Doctor. Besides the prayers and obvious hard work it takes from ALL of us to keep her healthy, I truly feel that McKean's aggressive treatments have kept her strong and it REALLY shows when she does her PFT's.

Today at her follow up visit we watched as her lung function continues to be super. Then we listened as her lungs sounded clear. Then we looked as her nasal polyp showed signs of shrinking with the affects of the meds McKean prescribed last month. AMAZING!

Last night Joel and I were talking about Elena's health. We wondered if her good health was a fluke and if other kids with CF her age were doing as well.

We fear her future for her. Her health is not predictable and can change in an instant. This can be frightening to think about, so we just DON'T think about it often. However, when we do it is a sad discusion.

I meantioned my thoughts to McKean. His answer, "TOBY (a newer med out since Elena's birth) has CHANGED CF." Yes, yes it has.

More new meds continue to change the outlook for Elena and her other friends with CF. The dollars that go into research REALLY are making a difference. I see it everyday when I look at Elena's growing body, when I place my head against her back to listen to her CLEAR lungs, when I watch her run and play with her siblings, when I see her catch a cold and throw it off quicker than the rest of us, when I begin to fear for her and I have her hug me and tell me what a great mom I am.

God is so good. He takes the bad and makes it good. Elena may have CF but the amazing stuff this child does is going to continue to rock my socks off...I just know it!

Her Rosebuds race is this weekend. I'm so very proud of her for having the idea of Rosebuds and "running" with it! It has been a success every year since it's creation three years ago. I can't wait to see what the dollar's raised is this year! I'll keep you posted.

There is still time to donate toward her team, click HERE. Thank you to ALL who have been so supportive of Elena!

Thursday, March 8, 2012

Polyp...hopefully not for long.

Elena's latest regular CF doctor visit showed that her lungs were rockstar awesome! However, Dr. McKean discovered a polyp in Elena's nose. This is pretty common for folks with CF. She is using two different nasal sprays to try and reduce the size of the polyp. She is fortunate that it is not bothering her breathing or causing any other problems at this time. We are hopeful that the meds will reduce the polyp and no further actions will need to be taken at this time. We should have answers in a couple weeks following her next visit to McKean. Meanwhile, the kid is 8!!!! When did THAT happen? As her birthday came and went this year I had such feelings of joy. I looked back at her baby book and smiled at the story of our first miracle; Elena. For those of you who are around me a lot, you know that March 3rd is usually surrounded by a few tears. This was the first year it was all smiles. I even watched her birth video without a tear! Time heals, God heals, and the joy of my family is infectious!

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